To maximise outcomes for people with MS, we need to make the partnership between hospital-based specialist services, GPs and community-based HCPs work.
I work as a nurse practitioner in General Practice and until my diagnosis last year I knew very little on MS. I think its a great idea. Currently we do a lot of our training through NB Medical so it may be an idea to work in partnership with this group so that you have email access to GPs
As most GP’s will see a limited number of patients with MS I definitely feel your courses should include pwms too. Self advocacy is so important and the knowledge of when or how a GP can help is invaluable in the current climate.
Yes! Also before menopause - in my experience the monthly cycle can really exacerbate current symptoms and make you feel like you’ve gone back several months in recovery each menses! I took the PoP birth control pill therapeutically for 6 years before HRT which really helped this effect on my MS.
I am a GP, and had relatively little knowledge of MS until my wife's diagnosis in 2018. The topics that you list are all helpful, and I think GPs need at a minimum to be made aware of all these issues. Some of the topics I think would be of more practical use in primary care than others, and so should have more time devoted to them on the course; others I think would be best raised at early consultations with the MS team (very happy to expand on this in further communication if you're interested). I think pwMS should most definitely be able to attend.
I think the main obstacle to the success of your proposed course would be GP engagement. By definition we have to have knowledge of a huge number of conditions, all of which we have to keep up to date on - a pretty mammoth task - and that means more time is devoted to certain very common conditions, so I'm not sure how many GPs would be actively seeking out detailed knowledge of MS, and of these, how many could engage over a period of 6 months. Some possible solutions (I'm sure there are others) : 1) contact GP training programmes and ask if they could include some seminars for GP trainees, ie a bit of a captive audience. 2) in my part of the country, an education trust under the umbrella of the LMC organises popular educational events for GPs/practice nurses. They often list links to third party education events. This would be a good way of advertising the course. I presume the same occurs throughout the country. 3) Similarly, the RCGP runs/hosts courses for GPs 4) many GPs attend knowledge update courses organised by NB Medical and Red Whale. They tend to cover a small number of topics in detail on the day and I often find myself becoming enthusiastic about a subject I'd not thought about much before. Perhaps you could lobby them to include a talk on MS, and ask them to also provide links to on-demand online learning modules developed by you in lieu of seminars. 5) advertise the course in GP mags/journals- eg Pulse, BMJ, BJGP 6) whether you run the course or not, keep knowledge and awareness in circulation by providing pwMS with a handheld file - or an app - containing material related to that you propose in the course. They could present this to their GP at each attendance if needs be.
Is it MS or menopause? GPs palm everything off when a woman hits a certain age as menopause/peri menopause. And I’m sure many women’s MS diagnoses are delayed due to this. Also the impact hormones has on MS. I could barely function until getting HRT.
Agree Helen, until I saw a locum GP , German and female, I had no idea that HRT might help. I’m 65 and have embraced patches with a passion. My brain fog has almost but disappeared and I have more energy ,even though I am wheelchair bound. My advise would be to search out GP locums, European trained GPs. Female If possible, but otherwise educate yourself by subscribing to Menopause Matters quarterly magazine, to be found on the net, failing that the library will help you.
I believe PWMS need to be educated as much as GPs and hopefully this would ease some of the burden on the health system by reducing the need for a HCP to get involved in circumstances where it's not necessary. Self advocacy is really important and in conjuction with an MS educated GP creates a very powerful frontline approach to dealing with the common symptoms of MS.
I always feel pushed between pillar and post between GP and MS team, one says it's MS, the other says not. The other issue is that my MS team are not at my local hospital so my MS team are reluctant to refer to MS related services (physio, continence, orthotics etc) at their hospital because they know it's a 2+ hour round trip, but they can't refer to my local hospital as it's not the same trust. If they write to GP it's then a long time before it gets actioned. My GP is months behind with letters.
I have same issue. I have awful problems with bowels at moment it's my MS. my heart pain was MS. That nearly cost me my life. Now housebound they still expect me to come to surgery, for vaccinations etc. What part of house bound do they not understand.
Yes its a good idea, however I would also ask what are my MS team meant to deal with in relation to my MS because at the moment it feels like just prescribing DMTs and nothing else. I actually think that it is pointless contacting my MS team over anything to do with my MS, it appears you have to know what to ask for, without having any information on what you can ask for. Personally I am completely demoralised dealing with my MS team, and get a shock if they help or show any interest at all. Patient care is pathway and silo driven to the detriment of the patient, however we are the ones that are made to feel a nuicense when asking for help.
That just makes any MS problems worse for the future and more work for the MS team. However I was generally unwell and needed to be referred on to Gyne, they didn't do it, in fact took more time telling me it wasn't their responsibility. I now have been informed I have stage 4 cancer, if they had referred on it could have been caught earlier , 2 years at least, and I might have had a chance of survival. Medics have a duty of care, something that mine have completely failed in and I now have a bleak future. And yes my GP tried and her referral was denied, it needed consultant to consultant.
Prior to COVID-19 many services did not prioritise consultant-to-consultant referrals. However due to the delays in getting the GP to make referrals we were told that consultant-to-consultant referrals were okay and took the pressure off GPs.
Here in Australia it is next to impossible to find a GP who knows anything about MS and there are no directories. PwMS are on their own unless they luck out and stumble on someone who has had a prior patient or has a special interest. A course or even site I could direct mine to would be amazing
Sep 28, 2022·edited Sep 28, 2022Liked by Gavin Giovannoni
Not sure how it is in England but in the us I am continuing to beg ms ologists for a just a name of a good gp.
My gps have been worthless. They dont know what ocrevus is and don’t take me seriously when I advocate for ny health. For example my gp wouldn’t give me a quick uti test when I had symptoms and when I tomd her all ms patients need uti testing quickly if symptoms arise she called me “weird” and shamed me. This week she literally could have killed me as I have covid for a second time and the first had me sicker than ever despite both boosters and Evusheld. The first time a covid test did not come up positive until three days of dangerously high fever (over 103 Fahrenheit). Paxlovid saved my life and had I gotten it sooner I might not have gotten this sick.
This time I got a positive test the very first day of fever and called right away saying I had 102 that I could tell was climbing , I was on a b cell depleter so high risk, it had worked for me before and would like paxlovid right away to try and avoid what happened last time. She informed me studies showed paxlovid did not work for people under 65 and said I could not know if my fever was climbing. This is supposedly one of the “best gps”. I got paxlovid from my specialist instead and it’s working miracles.
Sadly this experience is common. A gp does not factor ms or ms treatment and if you try and advocate for yourself get written off as a patient with psychological problems. I have tried five different gps in five years and find it impossible to get good care as a person w ms. It is no different than seeing a stranger at urgent care.
There is a HUGE need for gps who understand ms it is a huge gap. I find it impossible as a pwms to get adequate gp care. It is not helpful when neuros say this is a gp question . It should be I agree, amd it’s not fair to msologists but please understand you cannot send a pwms to their gp if they dont get the care they need.
I have always thought an option for a double appointment was needed… gp with neuro! Two birds one stone and yes double bill! Also Gavin your use of initials astounds me! Don’t know half of what they stand for I’m sorry to admit
I am not a medical expert however I suspect many of the problems on the list apply to other Long Term Conditions as well as getting old. I think GPs as well as consultants and their team need to be trained to ask these questions. How do I know there is a problem with my bowels or bladder that can be managed medically. Sometimes the problem is spotted by a medical specialist team that I not even know existed
We can only manage our medical (and MS) problems if there is an expert that can point out there is a problem. Sometimes the GP is not the expert but we need to access specialist care through them.
In my experience empathy and emotional intelligence are vital. How many medical experts have that skillset?
As someone who suffers from recurrent UTIs could you add: Day to day management of UTIs. I know this is a specialist area but your GP is your first port of call in acute flare-ups.
Partnership is a great idea. The MS study group by the Portuguese Neurology Association already made the same educational program to GP’s. There’s the contact to change ideas if needed:
Patients with a condition want their GP to be an expert on this condition. As do all the other patients with a different particular condition. Given the number of medical conditions and the rapidity that guidance and therapies change, this is unrealistic. This is why there are specialists. They have in depth knowledge on a very small sphere.
Rather than expecting GPs to be experts on everything, there needs to be easier access to specialist help
I spend quite a bit of my time with an understanding and considerate GP yet I still have to watch carefully that any solutions she offers don't present risks for me as an MS patient under DMT. eg. the vaccination she offered on my request was the live version ( Zostavax) and I then had to ask for Shingrix instead. None of us are perfect and can make mistakes but maybe some specialised training can provide some important guidelines/reminders of what they have to consider when offering support at the Primary care level.
I work as a nurse practitioner in General Practice and until my diagnosis last year I knew very little on MS. I think its a great idea. Currently we do a lot of our training through NB Medical so it may be an idea to work in partnership with this group so that you have email access to GPs
Melanie
As most GP’s will see a limited number of patients with MS I definitely feel your courses should include pwms too. Self advocacy is so important and the knowledge of when or how a GP can help is invaluable in the current climate.
Could you slip in a section on the role of hormones in ms, please?
I’m peri-menopausal and, as a fit, active person, am testimony to
what it is does for disease progression…….but am beating my head against a brick wall when it comes to getting hrt.
Yes! Also before menopause - in my experience the monthly cycle can really exacerbate current symptoms and make you feel like you’ve gone back several months in recovery each menses! I took the PoP birth control pill therapeutically for 6 years before HRT which really helped this effect on my MS.
I'm convinced there's a link. I was diagnosed with benign MS and my symptoms started to show and the disease to progress with the menopause.
I am a GP, and had relatively little knowledge of MS until my wife's diagnosis in 2018. The topics that you list are all helpful, and I think GPs need at a minimum to be made aware of all these issues. Some of the topics I think would be of more practical use in primary care than others, and so should have more time devoted to them on the course; others I think would be best raised at early consultations with the MS team (very happy to expand on this in further communication if you're interested). I think pwMS should most definitely be able to attend.
I think the main obstacle to the success of your proposed course would be GP engagement. By definition we have to have knowledge of a huge number of conditions, all of which we have to keep up to date on - a pretty mammoth task - and that means more time is devoted to certain very common conditions, so I'm not sure how many GPs would be actively seeking out detailed knowledge of MS, and of these, how many could engage over a period of 6 months. Some possible solutions (I'm sure there are others) : 1) contact GP training programmes and ask if they could include some seminars for GP trainees, ie a bit of a captive audience. 2) in my part of the country, an education trust under the umbrella of the LMC organises popular educational events for GPs/practice nurses. They often list links to third party education events. This would be a good way of advertising the course. I presume the same occurs throughout the country. 3) Similarly, the RCGP runs/hosts courses for GPs 4) many GPs attend knowledge update courses organised by NB Medical and Red Whale. They tend to cover a small number of topics in detail on the day and I often find myself becoming enthusiastic about a subject I'd not thought about much before. Perhaps you could lobby them to include a talk on MS, and ask them to also provide links to on-demand online learning modules developed by you in lieu of seminars. 5) advertise the course in GP mags/journals- eg Pulse, BMJ, BJGP 6) whether you run the course or not, keep knowledge and awareness in circulation by providing pwMS with a handheld file - or an app - containing material related to that you propose in the course. They could present this to their GP at each attendance if needs be.
Very helpful. Thank you.
Is it MS or menopause? GPs palm everything off when a woman hits a certain age as menopause/peri menopause. And I’m sure many women’s MS diagnoses are delayed due to this. Also the impact hormones has on MS. I could barely function until getting HRT.
Agree Helen, until I saw a locum GP , German and female, I had no idea that HRT might help. I’m 65 and have embraced patches with a passion. My brain fog has almost but disappeared and I have more energy ,even though I am wheelchair bound. My advise would be to search out GP locums, European trained GPs. Female If possible, but otherwise educate yourself by subscribing to Menopause Matters quarterly magazine, to be found on the net, failing that the library will help you.
I believe PWMS need to be educated as much as GPs and hopefully this would ease some of the burden on the health system by reducing the need for a HCP to get involved in circumstances where it's not necessary. Self advocacy is really important and in conjuction with an MS educated GP creates a very powerful frontline approach to dealing with the common symptoms of MS.
Great idea!
I always feel pushed between pillar and post between GP and MS team, one says it's MS, the other says not. The other issue is that my MS team are not at my local hospital so my MS team are reluctant to refer to MS related services (physio, continence, orthotics etc) at their hospital because they know it's a 2+ hour round trip, but they can't refer to my local hospital as it's not the same trust. If they write to GP it's then a long time before it gets actioned. My GP is months behind with letters.
I have same issue. I have awful problems with bowels at moment it's my MS. my heart pain was MS. That nearly cost me my life. Now housebound they still expect me to come to surgery, for vaccinations etc. What part of house bound do they not understand.
Yes its a good idea, however I would also ask what are my MS team meant to deal with in relation to my MS because at the moment it feels like just prescribing DMTs and nothing else. I actually think that it is pointless contacting my MS team over anything to do with my MS, it appears you have to know what to ask for, without having any information on what you can ask for. Personally I am completely demoralised dealing with my MS team, and get a shock if they help or show any interest at all. Patient care is pathway and silo driven to the detriment of the patient, however we are the ones that are made to feel a nuicense when asking for help.
I suspect this is because they are overstretched. They should be looking after all MS-related issues and not just DMTs.
That just makes any MS problems worse for the future and more work for the MS team. However I was generally unwell and needed to be referred on to Gyne, they didn't do it, in fact took more time telling me it wasn't their responsibility. I now have been informed I have stage 4 cancer, if they had referred on it could have been caught earlier , 2 years at least, and I might have had a chance of survival. Medics have a duty of care, something that mine have completely failed in and I now have a bleak future. And yes my GP tried and her referral was denied, it needed consultant to consultant.
I am very sorry to hear this.
Prior to COVID-19 many services did not prioritise consultant-to-consultant referrals. However due to the delays in getting the GP to make referrals we were told that consultant-to-consultant referrals were okay and took the pressure off GPs.
Here in Australia it is next to impossible to find a GP who knows anything about MS and there are no directories. PwMS are on their own unless they luck out and stumble on someone who has had a prior patient or has a special interest. A course or even site I could direct mine to would be amazing
Not sure how it is in England but in the us I am continuing to beg ms ologists for a just a name of a good gp.
My gps have been worthless. They dont know what ocrevus is and don’t take me seriously when I advocate for ny health. For example my gp wouldn’t give me a quick uti test when I had symptoms and when I tomd her all ms patients need uti testing quickly if symptoms arise she called me “weird” and shamed me. This week she literally could have killed me as I have covid for a second time and the first had me sicker than ever despite both boosters and Evusheld. The first time a covid test did not come up positive until three days of dangerously high fever (over 103 Fahrenheit). Paxlovid saved my life and had I gotten it sooner I might not have gotten this sick.
This time I got a positive test the very first day of fever and called right away saying I had 102 that I could tell was climbing , I was on a b cell depleter so high risk, it had worked for me before and would like paxlovid right away to try and avoid what happened last time. She informed me studies showed paxlovid did not work for people under 65 and said I could not know if my fever was climbing. This is supposedly one of the “best gps”. I got paxlovid from my specialist instead and it’s working miracles.
Sadly this experience is common. A gp does not factor ms or ms treatment and if you try and advocate for yourself get written off as a patient with psychological problems. I have tried five different gps in five years and find it impossible to get good care as a person w ms. It is no different than seeing a stranger at urgent care.
There is a HUGE need for gps who understand ms it is a huge gap. I find it impossible as a pwms to get adequate gp care. It is not helpful when neuros say this is a gp question . It should be I agree, amd it’s not fair to msologists but please understand you cannot send a pwms to their gp if they dont get the care they need.
I have always thought an option for a double appointment was needed… gp with neuro! Two birds one stone and yes double bill! Also Gavin your use of initials astounds me! Don’t know half of what they stand for I’m sorry to admit
Hello,
I am not a medical expert however I suspect many of the problems on the list apply to other Long Term Conditions as well as getting old. I think GPs as well as consultants and their team need to be trained to ask these questions. How do I know there is a problem with my bowels or bladder that can be managed medically. Sometimes the problem is spotted by a medical specialist team that I not even know existed
We can only manage our medical (and MS) problems if there is an expert that can point out there is a problem. Sometimes the GP is not the expert but we need to access specialist care through them.
In my experience empathy and emotional intelligence are vital. How many medical experts have that skillset?
As someone who suffers from recurrent UTIs could you add: Day to day management of UTIs. I know this is a specialist area but your GP is your first port of call in acute flare-ups.
Partnership is a great idea. The MS study group by the Portuguese Neurology Association already made the same educational program to GP’s. There’s the contact to change ideas if needed:
geem.secretariado @ gmail.com
Patients with a condition want their GP to be an expert on this condition. As do all the other patients with a different particular condition. Given the number of medical conditions and the rapidity that guidance and therapies change, this is unrealistic. This is why there are specialists. They have in depth knowledge on a very small sphere.
Rather than expecting GPs to be experts on everything, there needs to be easier access to specialist help
Yes, yes. yes.
I spend quite a bit of my time with an understanding and considerate GP yet I still have to watch carefully that any solutions she offers don't present risks for me as an MS patient under DMT. eg. the vaccination she offered on my request was the live version ( Zostavax) and I then had to ask for Shingrix instead. None of us are perfect and can make mistakes but maybe some specialised training can provide some important guidelines/reminders of what they have to consider when offering support at the Primary care level.